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Let me first begin by reminding you about Tyler's biomedical therapy. In an attempt to save $$, we have slowly been trying phase out certain supplements, etc. to see if we notice any change or regression, i.e. with the intention of making sure that each supplement we give Tyler is working. For example, Tyler takes a massive dose of a multi vitamin (spectrum completely by kirkman labs) and we also gave him vitamin C. Well we figured Tyler was already getting enough vitmain C in the vitimain and he loves mandarin oranges so we removed that from his regime. We also wanted to see if the B12 injectins were still working. He's been on them since he was 18 months old and now approaching his 4th birthday. They are expensive, righ aroudn $100/month (which is not much really until you figure everything else we spedn on Ty) and it's a hard thing to do, i.e. poke your kid every other night. So we phased it out to see if we saw any regression and we did! The first week we weren't sure if it was just because he had been sick and was on antibiotics or because we traveleed, but he was definetly less aware, less involved, and less chatty than normal. Then last week, he had a fever so we figured maybe it was the fault of the fever. Until this weekend, Ty was finally fever free (will get to the fever story later). Steve's mom noticed that Tyler was more aggitated than normal, he was less able to sit still and concentrate, definetly less talkative and overall just not our Ty. We decided that obviuosly the injections are still providing a significant benefit to Tyler and started them again last night. Below is a description of just how or why they work more so.
B12 (cobalamin) is a vitamin “family” with five unique family members that each do different things: a) cyanocobalamin; b) hydroxycobalamin; c) adenosylcobalamin; d) glutathionylcobalamin; e) methylcobalamin. Out of the B12 family, only Methyl-B12 has the ability to activate the methionine/homocysteine biochemical pathway directly. It is this pathway that is responsible for the body’s entire sulfur-based detoxification system. It is this pathway that is responsible for the formation of S-adenosylmethionine (SAMe), the universal methyl donor. It is this pathway that is responsible for the formation of homocysteine, the “crossroads” molecule that is responsible either to reform methionine and SAMe or create cysteine, taurine, and glutathione. Glutathione is the body’s primary intracellular antioxidant and is responsible for many detoxification reactions, most notably those that involve the binding and removal of mercury, lead, cadmium, arsenic, nickel, tin, antimony, and many other lesser-known heavy metals that also bind to glutathione’s sulfur group.
On to the fever. Tyler had to be held out of school last week every day but Monday due to a fever. There were no other symptoms other than a fever, but Tuesday night it spiked and reached almost 105, it was pretty scary. Knowing that he obviously has some neurological deficiencies, I'm quite protective of his brain! None of us got sick, which never ever happens if Tyler truly is sick. My hypothesis (and shoudl research to see if other parents notice this) is that Tyler's body does not react well to antibiotics. Not that I don't believe in antiboitics, I know they are necessary at times and I know that there have been times I had been so sick that I may have ultimately died without them, however, I believe they fight the bugs, but actually weaken Tyler's system. He typically gets sick after he goes off antibiotics which is then the reason he went on them, how's that for irony. Ok anyway, that's the health front. We are all healthy at the moment, hopefully the boys can stay that way through their birthday.
Well our flex spending has been depleted, our savings depleted, and the ingenious plan I had that was going to save us $400 a month which is conveniently how much we needed to pay for speech, well that also fell through. ARGH. This on top of the fever last week and work stressors and other issues didn't make me a very happy person. I was gettign emails about upcoming summer programming and phoen calls about other services we had once inquried about and it was really getting me down. I want all those things for TYler but if I can't even afford speech, not sure how i can pay for all the other extras.. which in my mind aren't really extra's anyway, they are necessities. My mind was a bit of mush this weekend where i decide to not think about it for a bit, I needed a break from constantly trying to come up with new ideas. And then.. a guardian angel came through for us and gave us enough funds to pay for another month of speech yea! Kinda got my mind back in the direction it needed to go.. ok what next, what else can I do or what plan can I come up with to make it work.
Which brings me to my next though. we are really interested in doign HBOT therapy, especialyl since Tyler's progression on biomedical intervention so far has been relatively slow going, nothing has made a significant improvement, all just gradual improvements. So we plan to talk to his pediatrician more about this at the 4 year wellness visit with the pediatirican. The problem with HBOT is that it's expensive. $20,000 to purchase teh machine, $5000 per month to rent or you can pay by visit and go to a HBOT facility, well as you know our schedules are already crazy and it's something that you have to do daily around 30 times to see an improvement and its usually about 45 mins I think? anyway, I heard of a non profit facility in NC that offers it and free board for the time you are there. I also found out that if prescribed by a peditrician (which it has to be) that i could be covered under FMLA to take the time off work to take Tyler if we decide that route and this is only $2800. They also have fundraising ideas. So it's something I definetly want to look into more and make sure it's something worthwhile.. and again how to pay i"m not sure but we'd do fundraising. Maybe we could raise enough to rent one and do it from home who knows but we are just needing to prioritize what works and what doesn't work adn where we can get extra funds to try new things in addition to what we are already doing. You never know what combination of what therapies is going to work and I just want to make sure we remain open minded and committed to trying. On this website you can find out more info and see video about HBOT http://www.drneubrander.com/dev/index.html
We have an appt with TYler's teacher and therapists at school this week to go over Tyler's progress towards his goals and discuss concerns, etc. I'm looknig forward to this meeting and will update more once we talk to them.
